Image text: Chronically Lit’s Link Roundup: the best illness writing online
Picture yourself in an unfamiliar city. You have no access to directional signage, and public transportation is closed for repairs. For travelers with disabilities, these navigational barriers exist whether they’re vacationing someplace new or just trying to get to work. Architectural restrictions aren’t merely inconveniences: They’re physical markers of a built environment that has historically contributed to the marginalization of people with disabilities.
Bitch ran an article on ableist architecture, by Margaret Anderson. I was shocked to learn that in a not-so-distant past, “ugly laws” existed to keep disabled people from spending too much time in public spaces. Anderson covers accessibility issues faced during travel and highlights emerging research and apps geared toward making travel easier for people with disabilities.
“We’ve forgotten that we are all healers. We don’t have to go to school or memorize names in Latin; we all have access to plants and can comfort ourselves with our plant ancestors,” Grantham added. “Just as the Intertribal Canoe Journey has revitalized our culture, we hope that plant medicine will be one more pathway to connection and community healing.”
In Yes! Magazine, Mary Annette Pember writes about a bus that was a kitchen/treatment center during the Standing Rock protests and has now been transformed into a healing mobile of sorts by the Canoe Journey Herbalists.
Before working in strip clubs, I struggled to read people’s emotions through cues like facial expressions, postures, and tone of voice in real time. I processed events after the fact with tenuous evaluation, like peeling off layers of old wallpaper. At the time, it was not something I had words to explain, so I turned the blame on myself. Whenever I struggled to understand if someone was angry or bored, I went home and berated myself for being lazy, ditzy, and dumb as I obsessively evaluated the night. I just needed to try harder to be more present, I told myself.
In “The Secret Life of an Autistic Stripper” in Narratively, Reese Piper describes her trouble reading social cues, her journey realizing she is autistic, and her experiences stripping for work while navigating her interpersonal issues.
The bright overhead lights and clinical smell made me feel dizzy and vulnerable. I had chosen a woman doctor with the hope that a female would better understand the plight of another woman. But a Canadian snowstorm in January couldn’t have been colder than this doctor’s response. “You need to schedule a hysterectomy with my receptionist.”
Another literary magazine (sort of) dedicated to illness! Hospital Drive is a literary magazine out of the University of Virginia School of Medicine, and they feature poetry, art, essays, and fiction on the medical world, illness, and health. They’ve published work from both doctors’ and patients’ perspectives. The above quote is from “My Lovely Uterus” by Diane Caldwell.
You can help doctors understand just how debilitating your pain is by being more descriptive.
“It’s perfectly OK to be a little more flowery in the description of pain,” says Jeter. “My pain is aching, burning. What does it feel like to you? Where is it? Does it move?”
In NPR’s “Words Matter When Talking With Your Doctor,” Patti Neighmond discusses the limitations of the 1-10 pain scale and other ways patients can describe their pain to doctors in order to be better understood.
At the back of my mind is my HIV status. I was diagnosed at a time when tabloids declared that we, the “infected ones,” had a moral duty to tell the world about our “toxic” blood. My condition brings up a whole raft of privacy issues around if and when I should tell someone. My viral load is undetectable, so there’s no risk of transmission, but I have been met with aggressive reactions when potential sexual partners have discovered my status. One man told me that he would tell people that I was “infected” with AIDS and was trying to infect others; another told me he’d beat me up for putting him at risk.
I’m grateful for this essay by Juno Roche in Broadly about using dating apps as a Trans person with HIV. It educated me and required me to check some of my own misconceptions.
We are Chronically Academic, a network of academics with disabilities and chronic conditions. We welcome members across all academic disciplines. Our aim is to create a network of mutual support and resources for academics with disabilities and chronic conditions and to raise public awareness for our cause.
Well, this is cool. Chronically Academic is a community for academics with chronic illnesses. They have an email list where people can ask for advice, and their site links to relevant articles, grant opportunities, and information geared toward employers. People may follow them on twitter, too. I also found a similar resource through their site specific to PhD students called PhDisabled.
“He came to the door of the exam room, and I started to tell him my symptoms,” Ms. Nece said. “He said: ‘Let me cut to the chase. You need to lose weight.’”
The doctor, she said, never examined her. But he made a diagnosis, “obesity pain,” and relayed it to her internist. In fact, she later learned, she had progressive scoliosis, a condition not caused by obesity.
In the New York Times, Gina Kolata writes about healthcare obstacles obese people face due to equipment design, doctors’ preconceived ideas about obesity, and more.
Jay Vera Summer is the Editor in Chief of Chronically Lit.
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